Catryna Bilyk (Tasmania, Australian Labor Party) Share this | Hansard source

I'd like to start my contribution on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 by thanking Shelley Beverley, a young woman living with mitochondrial disease who met with me and shared her story. Shelley's story is a perfect example of the devastation that mitochondrial disease causes. As a genetic disease, those who live with it are likely to see its impact not only on themselves but on multiple family members.

Shelley lost her mother in 2016 after she experienced heart failure, muscle weakness and fluid on her lungs. Her brother died the following year, a few weeks short of his 35th birthday, after experiencing seizures and stroke-like symptoms. He had also suffered from migraines, vomiting and hallucinations. Shelley herself has experienced many horrific symptoms, including hearing loss, muscle weakness and diabetes. She also has a high risk of heart failure. She regularly visits a range of specialists, and the disease has put incredible pressure on her career, finances and family. Adding to this pressure is the constant fear that, like her mother and brother, her life may be cut short by this awful disease. Shelley and her partner have a strong desire to have a happy, healthy child. If you want to read Shelley's story in more detail, it's available on the Mito Foundation website. For me, meeting with Shelley has given me a very personal and a very human perspective on what is an otherwise technical, clinical and ethical debate. And there are thousands more Australians with similar tragic stories to tell.

For those listening who are not familiar with mitochondrial disease, I'll just take a few minutes to explain what it is. The disease gets its name from the complex tiny organelles that cause it, mitochondria. Mitochondria reside in our body's cells. They provide our cells with the energy they need to power their biochemistry. You could say mitochondria are the batteries of our cells. Mitochondria have their own DNA, which is passed down through generations as the organelle replicates inside our cells. Children inherit mitochondria from their mother, as they reside in the mother's egg during conception. As such, the genetic risk for mitochondrial disease is always passed down from mother to child.

Mitochondrial disease occurs when the body's cells contain mitochondria with faulty DNA. This leads to the cells not receiving the energy they need to function, and as a result they start to break down. Just going back to the battery analogy, if a battery is faulty, the machine it is running loses power and dies. It is this process of the cells dying from lack of energy that leads to the devastating symptoms of mitochondrial disease. Around one in 200 people carry the genetic risk for mitochondrial disease, but one in 5,000 will be born with mitochondrial disease or disorders that lead to severe illness. There is no cure; prevention is the only option. While some people with mitochondrial disease go on to lead full and relatively normal lives, a particularly tragic outcome is that many sufferers do not survive childhood or even infancy. Around 50 babies a year are born with severe mitochondrial disease. Many of those children will die before their fifth birthday, and my conscience says to me: if I can stop one of those children dying, I will do my utmost.

By identifying carriers, it is possible to stop it from being transmitted. Sadly, this presents another cruel outcome of the disease: that a carrier cannot have children without the risk of passing it on. But this problem can be overcome with the mitochondrial donation IVF technique. This procedure provides an opportunity for women with mitochondrial disease to have children who are genetically similar to them but without passing on their mitochondria and, therefore, without passing on the disease. This bill will legalise this procedure and provide the appropriate regulatory framework for it. As such, the bill offers the possibility of allowing carriers to have children while, once and for all, eliminating this disease so that future generations do not have to suffer.

Mitochondrial donation is an assisted reproductive technology procedure in which nuclear DNA from the egg of a birth mother who carries the genetic risk for mitochondrial disease is inserted into a donor egg which is then combined with the father's sperm. The resulting child will inherit the nuclear DNA of their mother and father and the mitochondrial DNA of the egg donor.

A 2018 Senate inquiry explored a wide range of issues related to mitochondrial donation, and this was followed by an extensive community consultation in 2019 and 2020 conducted by the National Health and Medical Research Council, or the NHMRC. Both inquiries did an excellent job of exploring the scientific, social, moral and ethical considerations that go into whether to allow mitochondrial donation and the associated regulatory considerations. As a result, senators have an abundance of well-considered information that has been brought together through broad consultation to inform our positions on the bill.

I understand that there are senators in this place who hold moral, ethical or religious objections to this procedure, and I respect their opinion. As long as the senators have thought through these issues thoroughly and deeply, I appreciate the effort they have put in regardless of the conclusions they come to. For me personally, through my careful consideration of these issues, the case for legislative change is abundantly clear. I don't intend in my contribution to thoroughly explore the full range of issues outlined in the NHMRC's report or the Senate inquiry. I will, however, outline a couple of the key objections to this technique and respond to them.

One argument against legalising the procedure is that it's unnecessary. As the argument goes, parents have other options available to them, such as adoption or fostering, and a strong parenting bond can form with their child even though the child is not closely genetically related to them. The same argument, of course, could be applied to all parents accessing assisted reproductive technology, including ART procedures that are already lawful and regulated. And, just as an aside, in Tasmania there was one child adopted last year. So, if people need to adopt a child, it's not as easy as just getting your name on a list.

I and, I believe, society reject the view that parents who find it difficult, for whatever reason, to conceive by natural means should be denied the opportunity that is available to other parents. People living with mitochondrial disease should not face this discrimination on top of all the struggles and challenges this disease already presents. Even if we put aside the question of whether parents should be able to have genetically similar children, adoption and fostering, as I've said, may not be viable options. As was noted in the Senate inquiry, adoption and fostering programs have strict eligibility criteria, including health screening, and this counts them out as an option for parents with mitochondrial disease. Should mitochondrial donation be permitted in Australia, it may be the only viable pathway for women with mitochondrial disease.

Another common objection is the argument that this technique is a dangerous new experiment creating three-parent babies. Related to the three-parent argument is the argument put by some that children born by this technique will be confused about their parentage. The term 'three-parent baby' is an emotive term, but it's not accurate. The reality is that a child born under this technique inherits their nuclear DNA and, therefore, their genetic characteristics from two parents. The mitochondrial DNA contributed by the egg donor makes up about 0.1 per cent of the total DNA inherited. Even so, it would not have any effect on the child's appearance, personality or a range of other features. In fact, the only noticeable difference it will make to the child is that they will be free of mitochondrial disease. In practical terms, the child will have two biological parents and will grow up knowing and loving those parents. There is no reason to regard the egg donor as a parent at all. They are no more a parent than any other donor of bodily products, such as a blood donor or an organ donor. I've chosen to address two of the key arguments against this bill. There are, obviously, more arguments, but they're the two that I really wanted to respond to.

I just want to say, as I come to my conclusion, that I really appreciate the phenomenal amount of work that has gone into this bill, particularly from the health minister, Mr Greg Hunt, and the shadow minister, Mr Mark Butler. I also want to acknowledge Mr Butler's predecessor, Mr Chris Bowen, who has also studied and consulted extensively on this issue and with whom I had very informative discussions about mitochondrial donation when it was first raised with me. The other person I would really like to thank is Mike Freelander, the member for Macarthur, a paediatrician of about 40 years experience who I also sought information from. I found him so helpful in those discussions. Again, I want to thank Shelley Beverley for her strong advocacy and for sharing her story with me and explaining what this legislative change means for her and her family. Finally, I would really like to thank the Mito Foundation, whose representatives have also spoken to me and strongly advocated for this bill on behalf of the thousands of Australians living with mitochondrial disease.

It's been several years since the parliament and the government started exploring the option of legislating to allow mitochondrial donation. Australians living with this disease have waited far too long for a regulatory framework to catch up with the advances in medical technology. But we have the opportunity to allow women carrying the genetic risk for mitochondrial disease to have biological children without the fear of passing on the disease. Parties across both chambers have granted their members and senators a conscience vote on this issue, and I have no hesitation in supporting it. I commend the bill to the Senate.